A qualitative exploration of tuberculosis patients who were lost to follow-up in Malaysia

• DOI: 10.1371/journal.pone.0289222
• Publication Date: 2023-09-07T17:27:23Z
• Authors: Peter Seah Keng Tok; Li Ping Wong; Su May Liew; Asmah Razali; Mohd Ihsani Mahmood; Thilaka Chinnayah; Lisa Kawatsu; Haidar Rizal Toha; Khalijah Mohd Yusof; Rozanah Abd Rahman; Shaharom Nor Azia...; Tharani Loganathan
• Keywords: Family medicine; Drug-Related Side Effects and Adverse Reactions; Epidemiology; Economics; Science; Social Sciences; Financial Stress; FOS: Health sciences; Interpersonal communication; Social psychology; Sociology; Qualitative research; Health Sciences; Pathology; Humans; Tuberculosis; Psychology; Economic growth; Epidemiology and Pathogenesis of Pneumocystis Pneumonia; Communication; Q; 1. No poverty; R; Malaysia; Health care; Human immunodeficiency virus (HIV); Impact of Mental Illness on Family Caregivers; Social science; 3. Good health; FOS: Sociology; FOS: Psychology; Treatment; Clinical Psychology; Infectious Diseases; Medicine; Lost to Follow-Up; Perception; Research Article; Tb treatment; Neuroscience

Background Loss to follow-up (LTFU) is an unsuccessful treatment outcome for tuberculosis (TB) patients. In Malaysia, LTFU affects around 1 in 20 TB patients. Integration of qualitative research methods and evidence will provide a better understanding of LTFU and its underlying issues. In this study, we qualitatively explored TB patients’ experiences in receiving treatment and their reasons for leaving TB care.

Method In-depth interviews of 15 patients with a history of LTFU were conducted from January to September 2020. Interview guides were developed to explore TB patients’ experiences while receiving treatment, including challenges faced and reasons for treatment interruption. Data were thematically analysed using the framework method.

Results We identified 11 emerging themes that occurred at four levels of interaction with TB patients. First, at the patient personal level, TB beliefs referring to patients’ perception of illness and wellness, patients’ perceived role of traditional and complementary medicine, and substance abuse were important. Second, the healthcare system and treatment factors that were highlighted included the organisation of care and treatment, interaction with healthcare professionals, particularly in communication and counselling, and TB medications’ side effects. Third, structural factors including financial burden, logistical and transportation issues and work-related factors were identified to be barriers to treatment continuation. Fourth, the interpersonal level interaction of patients should not be neglected; this includes family relationships and support as well as peer influence.

Conclusion Study findings put forth issues and challenges faced by TB patients while receiving treatment and underscore areas where actions can be taken. This will contribute to informing the development and implementation of future TB control strategies that are responsive to TB patients’ needs and concerns, to effectively address LTFU and ensure better treatment completion rates among TB patients in Malaysia.